The Silent Truth: AIP, Restrictive Diets, and Disordered Eating

Five years ago, while talking with a distraught client, I had a moment of clarity that began to alter my view of health, nutrition, and well-being: Autoimmune Paleo (AIP) and other restrictive diets were causing Disordered Eating and Orthorexia. Not in all people and not in all cases; but, the relationship – and all its trauma, pain, and suffering – were far too real, for far too many.

It’s only now, though – with the Autoimmune Paleo and restrictive diet communities continuing to trivialize the significance and prevalence of Disordered Eating within their own movements – that I fully recognize and appreciate the weight of my revelation that day. And, today I’m officially calling BS on the industry’s relative silence on the topic.

This article, then, is giving voice to the many thousands of people suffering as a result of their journey – to those who hear, “It’s you, not the diet,” in their experiences – because a token article or brief mention within the volume of discussions, forums, groups, chats, blogs, and books, has marginalized their reality for too long.

But… back to my story.

My client that day had started AIP one month prior and was feeling worse, not better. She really wanted to “do AIP right” and thought that if she followed it exactly, she would put her Lupus into remission. Getting worse, then, triggered waves of confusion, apprehension, shame, and guilt.

She had read AIP blogs and books and many encouraging recovery stories. She had cleaned out her kitchen and spent weeks making meal plans. She was doing everything she was guided to do and she was doing it as perfectly as she could.

But, because she was moving backward not forward, she was absolutely convinced that she wasn’t doing enough or was doing it “wrong.” So, she did what so many others in her shoes do: Look online for AIP support.

The messages and feedback she got from various thought leaders and group forums made it all sound so simple:

Give it more time;

Be careful not to cross-contaminate food;

Start a diet journal;

Surround yourself with other AIP-ers;

Switch your mindset to how much you can eat on AIP instead of how little;

Do an AIP Reset Program if you get off track;

Only trust those approved by the AIP badge.

Believing there had to be more still to eliminate, she reached out to me to walk her through her plan and find where she “might be messing up.”

When we started our appointment, she was visibly nervous and had a notepad and pen to catch every word we discussed. The following is my best recollection of our conversation.

“I know I’m not doing enough or doing something wrong,” she said at the outset, “because I feel worse. And, I know I need to cut out even more foods, but I really don’t want to.”

After walking me through everything she’d done up to this point, I looked straight into her eyes and said, “Listen to me. You are doing enough. You are. You’ve achieved perfect AIP-status. You’re what I call a ‘Perfect Performer.’”

Then she started crying – faintly at first, and then a bit more heavily.

“What are you experiencing right now?” I asked.

“Relief,” she said through her tears. “I am relieved. I don’t eat organ meat. I can’t stand the taste of it. I actually gag when I eat it. It’s the only thing I haven’t done to be ‘perfect AIP.’ And, I thought you were going to tell me I couldn’t truly be AIP until I ate organ meat. So, I’m just relieved.”

“But, in my AIP Facebook group,” she retorted, “I was told that eating organ meat and bone broth was essential to doing AIP correctly. And, when I challenged the view, I was shut down and told that if I questioned the diet, I’d be kicked out of the group.”

“Listen,” I said, “You don’t have to drink bone broth and you don’t need to eat organ meat. You can do anything and everything you want. This is your journey and you get to do it however you want. I stand behind you 100%.”

With that, her tears began to flow as freely as she suddenly felt, and we had the opportunity to spend the rest of our time together focused on what mattered most: Customizing AIP in a way that felt attainable to her, including the help of functional medicine doctors and a focus on gut restoration. No more guilt. No more confusion. No more fear.

This was a pivotal moment for me as a practitioner, as my eyes were first opened to the emotional and psychological toll restrictive diets frequently have on individuals.

Unfortunately, though, she was just the tip of the iceberg. I’ve since seen hundreds of hurting and confused clients in different states of generalized stress, many of whom felt abandoned by, and estranged from, AIP groups for publicly questioning and challenging the diet.

As heartbreaking as it is, the phrases below – in all of their variations – are some of the most common I’ve heard in recent years:

“I’m not disciplined enough to restrict my food to put myself into remission, so I feel like a failure.”

“I was full-blown Orthorexia after one year of AIP and now I’m working with a therapist.”

“I sought you out because I heard you won’t make me ‘AIP-harder.’”

“My functional medicine doctor told me I needed to be AIP for at least six months, and I cry every day because I don’t know if I can do it.”

“I’m terrified of food since going AIP.”

“I refuse to come off AIP, because I may flare again. I feel trapped and scared.”

“I’m down to 10 foods after being AIP for 2 years.”

“When I read AIP blogs, they say the loss of oral tolerance is not real. I don’t know what or who to believe anymore.”

“This diet is so restrictive that I can’t control my AIP-treat binges. I don’t know how to stop.”

“I’ve lost friends and my social life being on AIP.”

Today, having heard thousands of references like those above from clients, colleagues, and community members, it’s obvious to me that there’s a direct connection between restrictive diets (including AIP) and Disordered Eating and Orthorexia.

Equally important, I think the problem is much more pervasive within the AIP and restrictive diet communities than its participants and leaders are willing to admit.

The scientific and medical communities are hesitant to say that diets themselves cause disordered eating. If you dig into the research, you’ll find wordisms like “precursor” or “significant risk factor” or “potential trigger.”

This grey area has, in turn, allowed those leading the restrictive diet communities – like AIP, Keto, Low Fodmap, etc. – to frequently deny and hide from their responsibility in the anguish suffered by so many. It’s also granted tacit permission to authors, Facebook group admins, bloggers, and other specialists to willfully ignore and/or shut down discussion around this devastating reality faced by so many.

Make no mistake, though, the pass/fail construct of restrictive diets is itself driving an unwell condition that I’ve come to term, “Healing Diet Orthorexia.” HDO is characterized by a pronounced obsession with restrictive eating, such that individuals believe their dietary choices are matters of disease remission, life, and/or death. Rather than being generic forms of Disordered Eating or Orthorexia, HDO is a mental, emotional, and psychological condition brought on, and exacerbated, by a diet meant to heal disease.

Here’s an example of what I now see as Healing Diet Orthorexia, pulled together from threads of numerous clients and colleagues with whom I’ve talked. It isn’t just about a “healthy diet;” instead, it comes to be about an individual’s power to be restrictive enough with food and strong enough of mind to heal themselves at all costs.

Meet Linda, a 48-year old with Multiple Sclerosis who’s been experiencing more frequent and severe MS flares in the last two years.

Stage 1: Motivation

Highly motivated to change her circumstances, Linda decides to “take her health into her own hands.” Like so many others before her, she quickly finds her way online to the AIP diet. Inspired, but nervous, she leaps into the world of restrictive eating, ready to heal herself and lessen the frequency of flares.

Stage 2: Frustration

After eight months of diligence and vigilance to the ways of AIP, she’s made progress but is still regularly experiencing symptoms. Linda had expectations that she would have made more progress by this point, after having read volumes of online stories about the successes of others. She feels like she’s done something wrong and assumes that she hasn’t been strict enough or hasn’t eaten enough of the right vegetables and nutrient-dense foods.

Stage 3: Recommitment

Linda tries coming off AIP and just being Paleo, by reintroducing a few foods (after all, AIP is supposed to be a temporary diet). But, she flares and feels numbness in her right leg, even though she followed all the reintroduction instructions presented on various AIP web sites. So, she decides that she needs to go full AIP again and even decides to remove additional foods like sweet potatoes and plantain chips that she had previously used as “treats.”

Stage 4: Depression

Three months later, with incremental improvement in her latest full AIP try, she reintroduces the same sweet potatoes she used to love. Now, however, she feels numbness in her left leg that she hadn’t felt just three months before. She’s psychologically crushed and begins to fall into a mild depression, wondering how and why her body continues failing her.

Stage 5: Obsession

As her low-level depression builds, Linda becomes more and more fixated on her restrictions, fearing that even one food “mess up” could ruin the small increments of progress she’s made. As a result, she starts:

Spending hours each day thinking about her food, meal plans, and what she may be doing wrong to cause her progress to stall;

Waking up in the middle of the night afraid that any new food may cause her to lose her ability to walk;

Withdrawing from social situations; and, lastly,

Convincing herself that God and the Universe are punishing her with this disease.

Stage 6: Relief

After 18 months, Linda gets the help she really needs, finding support outside the closed world of AIP. Working with a therapist, coach, and nutritionist, she comes to recognize the inflammatory drivers unique to her that are contributing to MS; discovers ways she can work with her fear around food and her diagnosis (rather than against them); and builds a new tool kit to heal the part of herself that believes the only way to manage her fear of flaring is by restriction.

If this sounds too familiar to you – if you’ve been on AIP or on any kind of restrictive diet and are feeling the symptoms of Healing Diet Orthorexia or Disordered Eating – you are not alone. There are thousands of others experiencing this with you. Silently.

I’m so sorry this is happening, and I believe you. I believe your story, your experience, and your feelings. I believe you 100%.

I encourage you to take your inner-voice to heart and find a professional that can help you sort through your experiences on AIP, understand what’s happening, and work with you to address the challenges.

Your story is still being written, and you have the opportunity to heal and find profound meaning in your struggles.

On a final note, I recognize that some may view this entire discussion as self-serving, given my professional practice. Those naysayers and deniers would be wrong, pure and simple.

This perspective is the culmination of my own learnings and experiences as a practitioner and my own recognition of what my clients have been telling me and struggling with for years. My only real concern, therefore, is reaching those for whom these thoughts and words ring true; and, sadly, there are far too many of you.

That said, I do acknowledge my part in the AIP/restrictive diet movement, as well as my evolution. When I began focusing my practice on the field almost seven years ago, I jumped into the deep end of the pool head-first. My twin sister had recently been diagnosed with an autoimmune disease and was running out of treatment options. I truly believed AIP was the answer to her problems and to the prevention of ones for me.

However, beginning with my revelatory client discussion five years ago and continuing on through my work with, and observations of, so many, I began adjusting my practice and approach to clients, while shifting my perspective about restriction and seeking other options available to those with illness.

Make no mistake, I continue to believe that removing inflammatory foods can be useful in healing inflammatory disease and that customized restriction can have a multitude of benefits under the right circumstances.

However, I patently reject the one-size-fits-all approach to wellness so prevalent in today’s communities, which unfairly stigmatizes and rejects those who “fail” or cast doubt. Because for too many, AIP and other restrictive diets are the start of a painful, emotional journey they didn’t see coming. Instead of finding the magic bullet they felt was promised to them by the “nutrient density” and “focus on what you can have instead of what you can’t” jargon, they’re struggling and confused and don’t know where to turn.

It’s not about the food; it’s about each person’s relationship to healing. When we focus on that, healing happens.

I would love to hear from you. If you would like to share your story, please do. You can comment here (scroll to the very bottom of this page) or message me directly: transformationaleating@gmail.com

My website and IG aren’t AIP Lifestyle anymore. I run the Beyond AIP FB group which is a safe and supportive place for those growing out of AIP. And, while I still have Autoimmune Protocol Diet FB page, I do so because I want the emerging autoimmune science to be shared in a thoughtful way and give resources beyond restrictive dieting.

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Jessica

Jessica Flanigan is a clinical nutritionist, author and spiritual coach. She has developed many mind-body techniques for those with chronic disease to develop a different relationship with their circumstances and find healing.

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25 Comments

Joanne Hurley
August 20, 2019 at 6:21 am

Hi
So I thought this discussion helpful. I knew immediately that I could not eat a totally restrictive diet. I went gluten free for 2 years. I made big progress now sleep 2 hours less have eyebrows and body hair again and lost some weight. . I eat bread occasionally if friends forget to make something proper for me. Also on a really bad day I eat a piece of french bread or pizza when it is served. I savor the flavor and then go back to eating gluten free. I refuse to be tramatized I take lots of supplements and excise . The psychological aspects of food are very important to remember. Joanne

Thank you for sharing that Joanne! I am glad you found a path that works for you that is manageable. Having eyebrows, hair and more time in your day are incredibly important! My friends make me food (gluten and dairy-free) when I visit too. It helps a lot. Thank you for your comment! warmly, Jessica

Your scenarios explained here, as you know, mimic my experience. I continue to give thanks for your humility, and your willingness to share truthfully about what really happened to so many of us. There is hope. I was down to 6-10 foods for years. I eat a very wide range of paleo and even organic processed foods foods now. I avoid gluten but that’s it. It has been an extremely long healing journey. God has been gracious to me and I forgive and love myself ❤️Thank you for being a part of my journey and for sharing Jessica. We love you! Megan M.

I teared up reading your comment Megan. Thank you. I am so sorry for the experience you have had and your willingness to share here. You have always been an inspiration for me to lean into my own fears about sharing this topic. Thank you for helping me to help others who are finding their way through these waters. xo

I hear what your saying but I actually eat more foods now on aip then I did before ( lots of veggies and lots of different varieties of meats). Before aip I ate lots of cheese, bread, and not enough vegetables. I sleep better, my hair looks better and I have way more energy. I still have inflammation but I feel like most people do. I’m still very interested in the subject and willing to learn any new thoughts on different ways to look at food😊

Hi Carmen! Thank you for sharing your thoughts. I am so glad you had a good experience on AIP!! Disordered eating and Healing Diet Orthorexia can happen in a group of folks even if it seems that there are more food choices. The structure of it can trigger by a place inside someone where food is a form of safety and control that goes beyond food. Their experience + threshold of safety + restriction + belief system = disordered eating. It can seem mysterious that 2 people can go on the same diet but have different experiences. Some go on AIP and find freedom and an abundance of choice because that is what feels true to them. Some do not. But, because at the heart of it is the restriction, it can be a serious emotional trigger for some and that trigger can be the food that for some feels like an expansion of choice, but for others is not.

Thank you! I worked with a Funtional Dr who is also an MD and his team of nutritionists for 4 months, I started the AIP on my own 2 months prior to that. I was diagnosed by my rheumatologist with a “very stubborn” case if reactive arthritis. I was desperate, terrified my pain and swelling was my new normal and followed the “rules” precisely. However I travel for work, am raising an active child and am not good in the kitchen. I refused to eat anything on the NO list and starved instead of braking the rules. I appealed to the team of nutritionists and their reply was that I could eat nuts but only after soaking them for 72 hours first. (We broke up after this) I had lost 40 lbs by then and my rheumatologist found that I was severely anemic and my inflammation markers were higher than ever. I decided to trust her and eventually we found the right meds to bring my markers into normal range. I still have flare ups but nothing like before. Then I gained all of the weight back and then some. I still struggle with whether diet will help. Keto isn’t working (never reach ketosis) would love to learn more from you.

Hi Deborah! Thank you so much for sharing your experience. You highlight a point I hear over and over….that often those in the place of providing guidance and support (care teams) are in critical need of help in this area and understanding what is problematic in clients. Next month I am speaking at a microbiome conference and introducing Healing Diet Orthorexia term, why screening is important (in all stages of care) and how to do that. Your story highlights that need from my perspective. But, often because individuals are facing serious issues (not being able to work, walk, etc) the restriction of the diet is downplayed because so much is at stake AND people some say they eat a more diverse diet on AIP. I am glad you found a way through and medication is helping. That is really important too because many feel as though they have failed when they go on medication and that is just not true. Again, thank you for your insight. warmly, jessica

Not an expert – but keeping down inflammation has been the running theme in my life the last 15 years… Omega-3’s really help. In my opinion, they’re better than steroids. Doing what I can to get those in my diet and minimize omega-6 when I can (basically, ditching vegetable oil, unless it’s olive oil, coconut, palm, or avocado oil – also making sure my meat and dairy come from healthy animals) has made a huge difference for me.

Also, paying attention to TH-1/TH-2 dominance has been huge for me. People with my autoimmune conditions tend to be TH-1 dominant (but it can switch) – I find eating things that stimulate TH-2 help my condition. Coffee, green tea, lycopene, and some others help someone with TH-1 dominance. I stay away from astragalus, echinacea, lemon balm, and a few others because they worsen my autoimmune condition – but they could be helpful to someone who is TH-2 dominant. Also, probiotics, vitamins A & E, and colostrum help modulate TH-1 and TH-2… Tumeric/curcumin help, too – I’m sure there are articles out there explaining it better and more in depth.

Also – vitamin D and magnesium – being deficient in those can cause inflammation. Anyway, those are some of the big ones on my list. (Also, staying gluten free is a no brainer for me – if I’m exposed, it’s like 4 days of joint and muscle pain, amongst other things.) Anyway, best wishes.

Hi, Jessica! It’s about time someone spoke up about the emotional and mental toll that restrictive eating (for health recovery) can take on a person. I’m not surprised you’re the one to speak out. Thank you!

Happily, I finally enjoy my food experiences after AIP, still with limited options, because I’ve radically accepted not every food is my friend. I focus on the people I’m with and having a good time, I don’t bring attention to myself regarding what I can eat, and I’ve learned to order last at a restaurant so my questions for the waiter don’t make my family or friend’s wait to place their order.

I can see how people could take AIP to a dark place, however, it literally gave me my life back. My base-line before AIP, I used to be so sick and so in pain that if I woke up that way today, I would stay home from work. I was so scared because I couldn’t afford not to work and didn’t want to miss out on life. I’m not that old.

Also, it’s meant to be temporary – you get to add stuff back one at a time after the first 3 to 6 months or so. The only things I’m not eating today are gluten, A-1 dairy, and potatoes. And that’s because they put me in a world of pain. (And really, I prefer to focus on all the healthy foods I can eat and the new things I’m always discovering… Like, say, how to make my own mayonnaise – yum! And it’s so easy.)

And, who knows, maybe one day I’ll be able to handle potatoes. It took a about 3 years to handle bell peppers without a hitch, so, who knows?

I think there’s a fine line – yeah, you don’t want to take it to a bad place, but I think doubt also helps bring people there. There are really no one-size fits all answers to this.

Jules…you accurately bring up why this is such a hard topic. SO many feel better. Massively better, while others are worse. I agree 100% about the fine line. I wrote this to validate those who are confused, scared and upset…
I am thrilled that you are feeling better!! That is incredible to read. I hope you can reintroduce the potatoes soon! warmly, jessica

Thanks. I’m probably due to challenge them – it’s been a year since I’ve tried. As of last August, though, after snacking on potato chips or french fries I’d spend the next day ice-packing my hands and other joints.

My husband and in-laws are Indian, so I tend to eat Indian food fairly often, which can often have some potato – I’ve been fine if I eat around it, (give the potatoes to my husband) or even if I did end up having a little. The problem had been more if I have an actual serving or more of potatoes. I should probably test it again – but it’s hard to choose a day to possibly be in pain, lol. (That, and I try to keep my carbs down – not necessarily full keto, but not sky high, either, so I don’t really feel the rush on that one.)

What I’m thankful for on this journey is the appreciation I gained for the body’s ability to heal. Also, real food just tastes wonderful. 🙂 Good luck with your clients. I know there’s a lot of emotional baggage that goes with autoimmune disease – helping others navigate that must take some real strength.

Thank you Jessica for your great article, thank goodness, eventually a professional who can have a foot in both camps and still be realistic. I have been on paleo and although felt well on it there were some foods that I really missed -= predominantly hot buttered toast which was a childhood favourite, and cheese and greek yoghurt – I am 65 years of age — and one thing that disturbed me was what I called the ‘paleo police’ who were so rigid. In the back of my mind when I first started paleo in 2015 (have been non-paleo for a few years) and researched and read everything and have a cupboard full of recipe books was ‘This is really a first world problem – so many people would love to have access to ANY food and it just highlights the inequality of choices and how lucky we are. ‘the other thing on my mind is that every day is a blessing and we do not know when we wake what the day will bring – so surely it is better to give thanks for the bounty in the life we are blessed to have and accept gratefully the food available to us. Many thanks again

Thank you Jenny! Yes, first world problem for sure, huh? Also, I miss buttered toast. I found a GF bread company in SF (that ships when they restock on Wednesdays) called SYRSLY bread and they make the best GF sourdough!! So, in case I can help you out in that area! They have a gum-free GF sandwich roll too. Thank you for your comment! 🙂 warmly, jessica

You could have written this about me. Thank you so much for doing it! I am currently trying to claw my way back from Oral intolerance. I can only eat greens, meat, and root vegetables. No spices, no fruits, and, of course, nothing that is non-AIP. I get an eye rash if I ever try anything not on my very limited list. I HAVE discovered something in my journey that might help others. I seem to have trouble detoxifying, something that I did not have trouble with before I went AIP. I am heterozygous MTHFR. Just recently I discovered through my own research that I might be riboflavin deficient, something that is common to those of us with methylation issues, especially if you don’t eat the foods that have this vitamin. Liver DOES have a lot of riboflavin but nobody can or should eat liver every day (those of us low methylators might need more B2 than the normal population). Salmon is also a good source but AIP made me histamine intolerant and I can’t eat much fish. Almonds are also a great source as are enriched grains and fortified milks (but these are non-AIP foods). So, this diet might potentially make some of us B2 deficient. B2 is crucial for Methylation and methylation is essential in processing salycilates, oxalates, and other toxins (right?). So, I’m supplementing now ( just trying this out) and my rashes are better. Maybe one day I will be able to eat blueberries again!

Oh my gosh this is me!! I’ve never even heard of orthorexia before but it’s totally me! I am so afraid of certain foods and completely convinced that I’m not better because I must not be doing it right! I had a dr tell me to go paleo, then whole30, then try AIP, then the Specific Carbohydrate Diet. And they are all *just different enough* that with each switch I’d spend money on new books to tell me how to do it. I’d spend days and days making meal plans and grocery lists and hours and hours in grocery stores reading ingredient labels to make sure I could have specific foods. I finally just had enough and quit them all! I’m trying to figure out what works best for me but I was feeling sooooo guilty about it! Thank you for sharing. I had no idea other people felt how I feel!

Hi,
My name is Emily and I have struggled with GI issues for several years. Chronic abdominal pain and bloating which led to a diagnosis of severe food sensitivities. While I eliminated those foods from my diet, I still had the chronic abdominal pain and severe bloating. I was later diagnosed with SIBO (small intestinal bacterial overgrowth). I went on a regimen of antibiotics to kill off the bad gut bacteria and I am feeling better, but still not 100%. The bloating is still there and it’s constant! I do have occasional abdominal pain but we are working through some motility issues that may continue to help improve that. I am active and exercise at least 4 days per week. I drink tons of water! I just want to feel good, not bloated! I have eliminated gluten, corn, dairy, soy, eggs from my diet because my food sensitivity test marked them as high aggravators . It did improve, but I still have the bloating. I’ve been told to try an AIP diet, avoid night shades, I’ve tried everything! I don’t know where to go from here!

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